Disease: a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.

Alopecia is an autoimmune disease that mistakenly attacks hair follicles, those follicles become inflamed and the result is hair loss.

One in fifty people will have alopecia at some point in their lives. It’s a high statistic and a very visible autoimmune disease. Most often we don’t see it because with hats, hairstyles, scarves and wigs, we are able to hide it.

Section of a hair from Gray’s Anatomy.

It is believed that a person’s genetic makeup may trigger the autoimmune reaction of alopecia, along with other possible triggers such as:

Trauma

Anxiety/Stress

Family Loss

Pregnancy/Childbirth

In the last two years I’ve experienced all of the above. Trauma from a car accident during my first pregnancy, the birth of my son, the diagnosis of postpartum anxiety and postpartum stress disorder following his birth, the passing of two beloved uncles during my second pregnancy and the birth of my daughter. I’ve read stories about people that have had total hair loss following just one of the events listed above. I’m not feeling sorry for myself, but acknowledging that this is a lot for a body to handle in a short period of time, especially with a sensitive system susceptible to autoimmunity. My hair loss has been on and off during the course of these events. Each time they’ve been in small patches and have started to grow back within months and without treatment. However, during the third trimester of my second pregnancy, just shortly following the sudden loss of my dearly loved uncle, my hair started to fall out in larger clumps. A friend that works for Newsweek asked me to share my story. The article below explains the first part of my experience with alopecia.

About a month after this was published, my daughter was born. I felt the same overwhelming state of euphoria that I experienced only 18 months before as she arrived exactly on her brother’s half birthday! With my awareness of the postpartum complications that can occur, I’ve been taking the time to practice yoga and meditation daily and have been feeling great. However, this time around the shock of labor and sudden drop in hormones have increased my hair loss to a level that I’ve never experienced. Within the first month of my daughter’s arrival, I lost more than half of my hair. I would say this is a traumatic event in itself.

Postpartum Alopecia is a temporary form of hair loss that many women experience after giving birth. During pregnancy, estrogen and progesterone levels increase causing the hair to stay in the growth cycle longer, which is why a pregnant woman’s hair tends to be at it’s best and grows tremendously during this time. After giving birth, the hormone levels immediately drop. This triggers the shedding cycle and therefore the hair that should have shed over the past nine months is quickly lost. It’s common for the hair in the temple/hair-line area to be affected. Typically, it takes three to six months for this period to stabilize. Unfortunately, there isn’t anything you can do to prevent this from occurring and the severity varies from woman to woman. Alopecia and the normal postpartum hair loss is a tough combination.

The Princess of Monaco suffered from alopecia totalis following a series of traumatic life events and it all grew back.

The title song from the musical keeps popping into my head these days, which made me wonder: what is hair and why the importance? Hair is simply modified skin, with keratin being the key structural component. It’s essentially a fibrous protein that we spend hours of time and many dollars to maintain with an endless list of haircare products on the market. Then there’s the barber/salons where we groom, dye, highlight, curl, straighten and style. Our culture is obsessed with haircare. Since I’m losing it, I keep asking myself how much I’m attached to it?

Attachment is the origin, the root of suffering; hence it is the cause of suffering. -Dalai Lama.

I’ve been studying Buddhist teachings and the philosophy of non-attachment. Since all things are impermanent, non-attachment is the only logical attitude one can have towards material things, our bodies, and even life itself. Clinging to the things of this world which are in constant transition is an impossible task. This is the importance of letting go. The impermanence of everything (except change, itself) is a scientific theorem known as the second law of thermodynamics or entropy. Understanding impermanence leads to gratitude for the miracle of the present as well as detachment from the small details. Acceptance of the way things are in the present moment is the Buddhist way to being centered and content.

I’ve never felt like my hair was part of my identity and have never been one to express myself through my hair. When I was younger, I always had it chin length for practicality, because it fit better in my swim/water polo cap. Since college it’s always been pretty long, but mostly because I didn’t know what else to do with it. I was looking through our Flickr account and in the past few years almost every photo my hair is either in a braid, bun or ponytail. I’ve never dyed it and trips to the salon have always been for a basic trim. Pretty boring. So why the complex with losing it?! Well, it’s also about losing the feeling of normalcy.

When you have alopecia, people tell you that it’s caused by stress…and then they tell you not to stress about it. Good one. How can you not be at least slightly worried about your health when handfuls of hair are falling out each day?! Well, I find that it is a daily struggle as I lose more and have no idea when it will stop. I know you’ll agree that it’s difficult to hear: ‘It’s just hair.’ I know people mean well and are trying to be supportive, but personally I then feel guilty, like I’m being vain for mourning something superficial. It’s also hard to hear: ‘So-and-so (insert famous actress above) shaved her head for that movie and looked great.’ Again, I know intentions are well and they’re trying to be supportive, but we did not choose this new ‘do and unlike celebrities, we aren’t getting paid for it! My best advice: Cry as much as you need to, a person has the right to mourn any loss. However, if you are dwelling too much, try really hard to remind yourself that hair is just one small piece of your physical being. It does not define you. Just as much as your fingernails, or skin, or size or any other element of the physical body does not define you!

There is no cure for alopecia, only treatments and the success varies for each case. Along with the clinical treatments of corticosteroid injections, (yes, shots in the head), and topical creams/ointments, there are alternatives that may aid in hair growth. Here is a list of what I’ve researched:

I saw my dermatologist last week and both she and a friend of mine suggested some dietary changes to possibly help remedy the problem: elimination of dairy and gluten and other inflammation causing foods. Where there is hair loss, the follicles are inflamed, so an anti-inflammatory diet can’t hurt.

Honestly, I felt annoyed after reading these lists. I don’t want to be that person with the strict diet constrictions. Plus, I had just gone 9-ish months without some of my favorite foods and now I’m supposed to eliminate even more?! I really love cheese with my wine, especially those unpasteurized soft cheeses that you’re not supposed to consume while pregnant. I think I had a chocolate milkshake every night during my last trimester. I love dark beer. I love pasta. I love our weekly In-N-Out Double-Double Animal Style cheeseburgers. Fortunately, my favorite meal, sushi, is gluten free. I love rice, but no soy sauce…it contains wheat.

I recently read a post with a sarcastic ending of: “…oh, lucky me and my first world problems.” I’d never heard this phrase before, but suddenly started coming across it more. Even having the OPTION to eliminate certain foods is definitely a ‘first world problem’ and I feel badly that I ever thought I was going to lose something by giving up processed foods. I’ve been thinking about both sets of my grandparents who lived off of rice and fish or whatever they caught or grew…or fermented. My very Croatian Catholic grandma tells a story about how she had to lie when she was in elementary school about how much milk she drank at home. She only drank the wine my great-grandparents made because they couldn’t afford milk. So I am embracing this change to eat simply and am going to drink plenty of wine and no milk.

I’ve felt stress in the past: college, grad school, work, not so wise life decisions, etc., but this is stress on a cellular level. The car accident, subsequent anxiety/ptsd, family loss and pregnancies/labors have triggered alopecia as I’ve never experienced before; I plan to try the topical treatment options, but I hope to get to the root of the problem and heal on a much deeper level. My Alopecia Project is my way of documenting this journey of loss and growth. This is a condition that I live with and I am committed to moving forward – healing from the inside out and bringing my body back to a balanced state. I have been doing my best to stay positive. I focus on caring for my beautiful babies; my son isn’t talking, but everyday he makes me laugh out loud. Even my little girl, only one month old, makes me laugh with her facial expressions…typically while passing gas. I have an amazing fiance that also makes me laugh and I feel so much love and support from him, my family and friends. I have shed many tears, but I’m over feeling sad and fearful of losing all my hair. I have two kids under two and don’t want to look back at this precious period in time and have any regret.

I am stating the obvious: alopecia sucks. BUT it’s a disease that is not life threatening and I am beyond grateful for that. If you are following this, I hope you find support, inspiration and this helps soothe your soul knowing that you are not alone in this crazy world of living with alopecia. I would love to hear your story, treatment suggestions, how you’ve coped or whatever you feel comfortable sharing here. XO

A post in an alopecia forum suggests that it can be therapeutic to share before, during and after photos. A little scary to share, but here they are.

P.S. Our dog seems to be having some sympathy hair loss, (actually just allergies according to our vet), but I like to think he’s shedding intentionally for moral support. (Wo)man’s best friend.

My little yogini and I outside of Stanford Children’s Hospital after teaching a little yoga session for the Children’s Alopecia Group of Northern California. “Yoga teaches us to cure what need not be endured and endure what cannot be cured.” B.K.S. Iyengar

Alopecia areata and anxiety. One small spot or handfuls of hair falling out in the shower… so very traumatic and an instant source of stress and anxiety. Since it is inflammation of the skin, there’s also that soreness of the scalp that occurs before shedding, yet another source of stress and anxiety with the anticipation of a new spot appearing where it’s achy. I see my daughter scratching the back of her head now and then… and I can’t help but to feel sadness and guilt for passing this autoimmune disorder to her. However, I’m reminded that as difficult as this experience has been, it’s been a beautiful, transformative one as well. I know deep in my heart that my daughter and I will inspire others as we continue to choose to not suffer from this disease, but embrace it as our life’s journey.

“…a battle you know nothing about. Be kind. Always.”

It has been a little over a year and a half since I began wearing a wig. At first it was really fun… I had a bald/shaved head for almost a year and suddenly I had a bob. I started to feel like my old self. Then one day I received a lovely handwritten letter from a guest at work. She had taken the time to reach out as she noticed I was wearing a wig. She shared that two of her girlfriends were currently suffering from cancer and that she was praying for me and my babies. She ended the letter with a polite, ‘excuse me if I am wrong, but I had to let you know that you have been in my thoughts and prayers since I met you.’ I was very touched by this, but also didn’t know if and how I should respond. I decided to ask for my manager’s opinion…

I explained that I have alopecia areata and currently shave my head. I handed her the letter to read and sat awkwardly awaiting her response. After finishing, she looked up and said: “You know, if I were you, I’d think about getting a better wig.” I was stunned, like I had been punched in the gut. I was in shock and disbelief. I somehow composed myself and kept the tears from flowing and asked what made it look unnatural? I thought that would give her the chance to realize that her comment was rude and inappropriate. I gave her the opportunity to redeem herself. Instead, she looked up examining my wig and said: “Well, it’s the part… and it doesn’t move right… and there’s a shininess to it.” I could feel my face getting red, my heart racing, but took a breath and replied: “This is a new wig. It was $800 and human hair wigs are thousands of dollars. With two babies, this is what we can afford right now.” She could tell I was upset, but still no apology.

As you alopecians can imagine, this comment hurt deeply. It angered me and I lost all respect for her. I shrugged her off as unkind and miserable, oblivious to others’ feelings as I witnessed many other situations where she put people down. I wasn’t going to let it get to me. In the end, they were just words from an ignorant person. Fortunately, shortly after I was able to move on to a better place and had the opportunity to address her comments. I accepted her apology. I recommitted to being very open about this disease for not only myself, but for my daughter. In a way I am thankful for this incident because it truly made me stronger. If my daughter experiences anything like this, I will share my experience with her. Otherwise, moving forward and focusing on all of the wonderful, compassionate people that have only provided love and support.

I truly believe in the power of moving meditation – yoga! If you are struggling with anxiety and alopecia, I highly recommend the two videos by Dina Amsterdam: InnerYoga for Stress and Anxiety AM and PM found on Gaiam:

My baby yogi and I outside of Stanford Children’s Hospital after the NAAF – Bay Area Children’s Alopecia Support Meeting. My little girl and I had the honor of teaching a yoga class to the Children’s Alopecia Group of Northern California. Just recently, she was also diagnosed with alopecia areata. About a month ago, my daughter had an allergic reaction, which her doctors believe may have triggered her alopecia. I noticed her small spot, (about the size of a dime), on the back of her sweet little head. The pediatrician and dermatologist confirmed it. The patch has since grown to about the size of a silver dollar. Yesterday we were surrounded by other children with alopecia, their parents and some of their grandparents. A circle of support. All love. We met a dad who shaves his head so that he and his four year old son are twins. During our yoga class, his son was a very typical little boy and seemed to have zero issue with his alopecia. His dad told my husband that he refers to anyone bald as: ‘his people.’ We met older kids that are completely content with their hair loss, and we also met parents that admit that they struggle more than their children do. As you alopecians know, the autoimmune disease is incurable and although it is not life-threatening, it is life-changing. It is a condition that my daughter and I share, but are learning to choose not to suffer from. My hope is that we can teach our children the principles of wabi-sabi philosophy: not to view anything as flawed, but to always see and celebrate beauty in imperfection. There’s a saying that you should always do what scares you most… well, the thought of this photo shoot scared the sh*! out of me. I won the SF scholarship and then almost chickened out because I recently shaved my head again. But I really wanted my daughter to see this one day and truly know that hair is really only one small piece of the physical body and has nothing to do with beauty. It’s almost Alopecia Awareness Month and I’m committed to being open about this autoimmune disease, not for myself, but for both of my babies: 4th Trimester Bodies Project

Another favorite: “We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.” To all the moms out there that are suffering from postpartum alopecia – it is so rough to lose your hair at any point in your life, but isn’t it especially hard when you’re also caring for your newborn? A friend sent me this beautiful note: The journey into motherhood is so wildly unique and such a beautiful transformation… maybe the excess shedding is a sign to make space for your new role. Joy and purpose are found in the challenges of life.

Eleven months ago, my autoimmune disorder felt out of control, but with small changes, I’ve seen major growth in a short period of time. However, where I’ve seen growth, I’ve also seen loss. One month ago I had a full head of hair. Then I noticed a small spot and in the last couple of weeks I’ve continued to shed hair in that same area, (in the back), where it all started. Immediately, I became fearful; what if it all falls out again? I saw this and wanted to pass it along… to all that are struggling with alopecia, take good care and as always, please remember that you’re not alone! XO

Six months later and the Seattle Seahawks win their first Super Bowl in franchise history! The same season the coach implements a mandatory yoga and meditation practice as part of their training program…

Over the last six months, (as part of my home practice), I included Vrksasana. The benefits of this posture mainly focus energy to strengthen the lower body, but I started meditating on the asana as a representation of growth. This offered a powerful doorway inward. I’d imagine the roots of my hair getting stronger as I found my balance and strength in the grounding of the posture. I’d close my eyes and visualize beautiful redwoods, or a bodhi, banyan, magnolias or a specific oak tree I used to drive by everyday on my way to work. I’d focus on the vitality of those root structures and imagine my own roots strengthen with each breath. Six months ago, my autoimmune disease felt out of control, but with small changes, I’ve seen major growth in a short period of time. I truly believe in the power of moving meditation – yoga!

My journey of yoga teacher training ended today with a lovely graduation ceremony. I signed up for the program in the midst of my hair loss; seeking a little adventure and a way to take my mind off of it. My life has become so much richer in ways I could not have imagined. I am beyond grateful for my Yoga Tree teachers, new friendships, and sacred space created by this new community. I can’t express how much I’ve loved this experience… and I have alopecia to thank for it! Thank you all so very much for your love and support… from the bottom of my heart. XO

A few progress photos over the last few months and our Yoga Tree Graduation!

It has been awhile since I’ve written here. I logged in and it warmed my heart to see the views by country. Again, I don’t have any answers for the best way to treat this condition or how to cope with it, but I will continue to be honest and share my journey in living with alopecia. I hope you had a very happy holiday season and I wish you lots of love and light in the new year… and most importantly, I hope you always remember that you are not alone in your struggles with alopecia.

It has been almost six months since I lost my hair and I admit, alopecia still fucking sucks, (I empathize!). BUT it has been a blessing in disguise. I hope you see a shift in your outlook on alopecia and are able to embrace the life changing experience. Six months ago, I’d cringe when people would say: ‘it’s just hair.’ I understand that comment is meant to be supportive, but personally I then felt guilty, like I was being vain for mourning something superficial. Sound familiar? Or it was also hard to hear: ‘So-and-so (insert famous actress) shaved her head for that movie and looked great.’ Again, I know intentions are well and they’re trying to be supportive, but we did not choose this new ‘do and unlike celebrities, we aren’t getting paid for it! My best advice: Cry as much as you need to, a person has the right to mourn any loss. However, if you are dwelling too much, try really hard to remind yourself that hair is just one small piece of your physical being. It does not define you. Just as much as your fingernails, or skin, or size or any other element of the physical body does not define you!

I haven’t mentioned this before, but when my daughter arrived six months ago, she had a very full, gorgeous head of dark hair. I would gladly give it all to her again. During this transformative period, anytime I feel sad about my hair, I remember my dad’s words: if someone asked if you’d trade all of your hair for two healthy babies, you’d do so without thinking twice. Without a doubt. My two healthy babies are at the top of my gratitude practice. I feel fortunate. I have alopecia areata. I chose to shave my head. I have hair, it’s just not a full head of hair right now. Besides one insensitive comment from a total stranger, I have not been bullied because I have this condition – just the opposite, I’ve felt an abundance of support and love. I think about children/teenagers that struggle with this disease that have alopecia totalis or alopecia universalis. These conditions alone are so difficult and isolating, then throw the cruelty of their peers on top of that. My heart breaks when I think of their pain and suffering. A great non-profit if you are helping a child cope with alopecia:

I searched ‘Sesame Street Hair’ and was surprised how many videos there are on the subject. I love that they’re teaching kids to celebrate their hair and their unique style, but also wish there was at least one video on kids with alopecia.

and one more, but yoga related…

Speaking of sesame…

A ritual that I’ve added to my day: Oil Pulling. It’s an ancient Ayurvedic practice for detoxification. Two of the many benefits include: a natural remedy for skin problems and reduces inflammation. I believe diet/lifestyle changes have been key in my hair regrowth and it’s possible oil pulling has been a big part of it. Worth a try? Take good care. XO

A friend posted this on Facebook and it really resonated with me. The What I Be Project is a portrait photography series that is all about honesty. Each person that takes part is extremely courageous. They are putting their insecurities out in the open, and exposing a side of themselves that nobody has seen before. By stating “I am not my_____,” they are claiming that they do in fact struggle with these issues, but it does not define who they are as a person.

Besides one photo, I haven’t shared any more because up until now I just wasn’t ready. Today I have the courage to share because I felt an amazing emotional release. Our yoga teachers have said numerous times that one day during our time together: you’ll find yourself crying on the mat and you may not know why. Yoga stirs up emotion and creates space for healing. This morning I attended a super intense vinyasa class that truly marked a shift for me. While in savasana, our teacher reminded us that we always have a choice. We can allow for the hardships in our lives to take over and define us… and we can let them take a toll on our health, well being, relationships with ourselves and others… OR we can roll with them. Always a choice. (Thank you Mark Morford). So there I was in savasana dripping with sweat and tears. Not a sobbing cry of sadness, but gentle tears of release that flowed lightly out of my eyes… and I felt at peace.

In the spirit of the What I Be Project: I am not my alopecia. I am a partner, mami, daughter, sister, granddaughter, niece, cousin, friend, designer, yogini… all roles that do not require hair! I am not my alopecia. I wrote it on my palm and took a photo this evening. As I look at these photos taken over the last 4 months I no longer attach any emotion. A few months ago, when I looked at the first shot, it was a very difficult thing to see and accept. Now, I look at the progress in such a short period of time and I think it’s really fascinating… cool in a way how it fell out in certain areas and remained in others.

I’m not quite to the point where I feel completely at ease in public without a headscarf or wig, but I know that day will come. And speaking of wigs… I wasn’t open to wearing one at first, but realized how great they are to change up the hat/headscarves. The downside of alopecia: you lose your hair. The upside: fun with wigs – Halloween is one of my favorite holidays – there’s always a bright side! My perspective has been shaped by the support of my solid family and friends (old + new!), and yoga. I am forever grateful for them.

The H E A R T . . .

In the yoga tradition, the chakras are junction points between the physical body and consciousness. The human body contains seven major chakras that are aligned in a column from the base of the spine to the top of the head. The ancient sages envisioned the chakras as wheels or energy centers, and each one is associated with a specific vibration. The heart chakra, known in Sanskrit as the anahata, is the energy center located in the area of our physical heart. This is the center in the body where love and spirit are joined. It is our heart that aches or fills with love, that feels compassion and trust…that seems empty or overflowing. When the energy in the heart chakra is flowing freely, we feel deeply connected to all beings and we experience an abundance of love, peace, and acceptance. When the heart center is blocked, we tend to feel isolated and fearful, unable to trust and receive the blessings of life.

We can open and clear the heart chakra with a simple meditation practice using the Sanskrit mantra: yum – the healing sound that resonates with the heart center. Begin by sitting cross-legged, (or if you prefer to rest on your back…whatever is most comfortable!). Close your eyes and take in a few deep breaths. Begin to let go of any thoughts about the past and any expectations for the future. Gently bring your thoughts in on the present moment by putting your attention on the area of your heart and take another deep inhalation. As you exhale, say the mantra yum in one long syllable. Feel the sensations in your body and feel the energy flowing effortlessly from the base of your spine through your heart chakra. Visualize the energy as a beautiful green light that nurtures and bathes your heart in pure love, clearing away the residue of the past. Repeat the mantra yum until you feel infused with a feeling of peace and safety.

In yoga, poses that open up the front body such as backbends allow the heart to open. A friend shared this recently and it’s so beautiful (thank you Jennie!):

Ustrasana (Camel) is a wonderful heart opening pose. Practice this pose to help heal and open the heart center. Our heart is the entryway to our soul and it cannot be fully opened and activated until we integrate the light and dark within us. It is in our heart where we learn to embrace and love our vulnerabilities so we can transcend the smallness of our human ego. When we are fully open, we remember our true nature and allow the energy of creation to flow freely through us. Everyday is an opportunity to share the compassion and love that emanates from your big beautiful heart! XOXO